ANA Discussion Forum
General Category => Inquiries => Topic started by: DarleneN on November 27, 2009, 12:42:54 am
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My 33 year old son was recently diagnosed as having a 3.5 cm. AN. As you can understand, this is pretty overwhelming for our family. I've been researching options before going with him and his wife next Tuesday to his first neurosurgeon appointment. I keep hearing that it is VERY important to get a doctor with outstanding experience in dealing with AN tumors this large. I heard that the House Ear Clinic in Los Angeles is the place to go. I recently spoke with Dr. Rick Friedman, and was very impressed with him. He said that the surgery option would most likely include losing hearing in that ear. My son is NOT happy about that possibility.
Three questions:
1) What have you heard about House Ear Clinic and Dr. Rick Friedman?
2) Has anyone heard of a way a 3.5 cm. AN tumor can be treated without losing hearing in that ear?
3) His insurance provider is Kaiser Permanente (an HMO). Any advice for getting Kaiser insurance to cover AN surgery done by a doctor outside Kaiser?
Thank you so much!
Darlene Newton
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Hi Darlene
I had a 3.8 cm AN removed at OHSU in Portland Or and retained most of the hearing that I had before surgery. Keep in mind that my hearing was reduced prior to surgery and that hearing preservation was not a goal of surgery. At 3.8 cm, facial nerve preservation was the most important goal for me. I think that as these tumors get bigger ,you have to accept that there will be some sort of loss and that retention of hearing may not be something that can be saved. It is all dependent on size, location etc and the people at House are top notch and are the best at what they do. I can tell you that I consulted with three neurosurgeons and not one-including the sugeon who did my surgery-thought that based on my scans my hearing would be preserved so I think it was more of a fluke than anything. So much depends on what they find when they get in there. My advice is to find an expirenced AN surgeon- who your son trusts-that will discuss with your son what his priorities for surgery are if choices have to be made once they get in there.
I do not have tips for insurance but I do know that every surgeon's office has someone to help coordinate insurance arrangements so they may be a helpful resource.
I wish your son the best Darlene. Like me-I was 37-he is relatively young to have an AN. Good Luck.
Erin
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Darlene, welcome.
It is indeed crucial to find a very experienced doctor, and I would say especially if there are "special circumstances" (large or unusual tumor, or whatnot) that becomes even more important. But it's always very important!
Dr. Friedman is much loved by his patients. Go to the upper left and search "Friedman" and you'll see.
Hearing preservation, if achieved, is like a cherry on top. I would not suggest that be a make-or-break goal of the surgery, or he'll be set up for disappointment. These tumors themselves, not to mention the surgery, tend to damage hearing, and it cannot regenerate. I cried when I heard I "might" lose hearing in one ear. Then over the course of a year (before surgery), I basically did lose it (then totally lost the remaining 4% in surgery), and it's surprisingly OK. It's upsetting to hear at a young age that one of your senses might be impaired, but if the hearing in his other ear is strong, it will be an annoyance, but not devastating to his life.
Erin put this all well, and at 3.8 cm I agree that he should focus more on facial nerve preservation. It's a rare person who would choose facial paralysis over SSD, I'd say.
House would be an excellent choice, I believe. For them, these surgeries are "routine," and I mean that in a good way. As you poke around here you'll see many stories of people who were patients of Dr. Friedman, and/or who traveled to House for other surgeons. If you're not from L.A. and would be traveling there, I believe two weeks of possible inconvenience to be well worth the lifetime results. Please continue to ask questions as you need to.
In particular, Alicia (search on her) had a very similar sized tumor and had Dr. Friedman as her surgeon in May. Her story may be helpful to you.
Best of luck.
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Hi, Darlene, welcome to the site. Glad you found us! I would recommend you contact the ANA office, if you haven't already. They can provide you with a wealth of information to go along with what you find here on the forum.
Dr. Friedman did my surgery this time last year...I can say nothing but very good things about the whole LA experience, from Dr. Friedman and Dr. Schwartz all the way to the nurses that cared for me post op while in the hospital. Though my tumor was much smaller than your son's, I did lose my hearing...but, I knew that I was sacrificing my hearing with the surgical approach I chose. The main concern I had, as Lilan indicated so many of us have, was the facial nerve. I was willing to sacrifice my perfect hearing in hopes of the docs having the best shot at doing no permanent harm to my facial nerve. That was accomplished. I did have temporary facial paralysis (8 weeks or so) as the tumor was indeed very stuck to my facial nerve. The surgical approach that is recommended is related not only to size, but location/position of the tumor.
It is so great that you are doing research for your son. Please ask any and all questions you may have...someone here will have an answer for you.
Cindy
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Hello and welcome Darlene ~
I'm sorry to learn about your son's AN diagnosis but pleased that you found the ANA website and decided to register and post your inquiries. I believe your questions have already been answered in some detail so I'll simply reiterate.
(a) The House Ear Cliinic in Los Angeles has a splendid reputation. Dr. Rick Friedman is a superstar in the AN field with an M.D. and a PhD. as well as publishing many professional papers relating to skull based surgery. Most important, Dr. Friedman has extensive experience with AN removal surgeries. Many of our members rave about him and are quite pleased with his surgical work. I believe the doctor has a genial personality, too, which is always welcome when dealing with a medical challenge such as an acoustic neuroma.
(b) I'm not a doctor but I believe that the Middle Fossa or the Retrosigmoid surgical approach both have a chance of saving some hearing in the affected ear. However, as previous posters have pointed out, some hearing loss is to be expected with these surgeries and the chances of retaining 100% hearing is near-infinitesimal, although it does occur. I know that the Translabyrinthine ('Translab') approach sacrifices hearing by cutting the nerve, so that is something to discuss with the surgeon. Counting on saving full hearing ability post-surgery is like hoping to pay your bills with money you expect to win buying lottery tickets: risky. I've lived with being SSD (Single Side Deaf) for some years and while it can be annoying, it is hardly an impediment to living a full life. Famous folks such as 'Beach Boy' Brian Wilson, one of the great pop musicians of the 1960's and actor Rob Lowe ('Brothers and Sisters') are deaf in one ear (neither from an acoustic neuroma) and seem to have neatly surmounted it. You son will too, if it comes to that.
(c) I have no experience with Kaiser Permanente insurance but appeals can often accomplish the goal of convincing the insurance company to cover an out-of-network physician/facility - but you may have to pay more in co-pays and such. I trust that some of our members will respond more helpfully to your query about Kaiser Permanete.
I leave the thread with my thanks for your participation and hope for a satisfactory outcome to this situation for you and your son. Feel free to ask any question and please consider the website and the folks that populate the forums as a resource for you. You're definitely among friends, here. :)
Jim
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Hi, Darlene,
I live in New Jersey and went to House Clinic for my translab procedure in January 2008. I am still awed by the amazing treatment and care I received there, and would do it all again in a heartbeat.
That being said, you've no doubt noticed the large number of excellent surgeons and treatment centers throughout the country that are cited on this forum by very satisfied patients, and as everyone says, you'll know in your mind and heart when you've found the one that's right for you.
My hearing loss was very gradual over a number of years prior to my surgery (hearing loss was my only symptom and I thought I just needed a hearing aid), so I didn't have to confront the prospect of losing perfect hearing as the result of my surgery. I think that would have absolutely terrified me, so I am very thankful that I knew prior to surgery that SSD (single side deafness), while certainly an inconvenience, is not the end of the world. And I do know that's easy for me to say ... and probably difficult for someone who's facing that problem to accept.
Best wishes as you, your son and his wife continue the research process, and I hope that all will go well with his treatment.
Catherine (JerseyGirl 2)
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Darlene -
House has a great reputation and Dr. Friedman is known as an incredible doctor. I don't know if your son having Kaiser insurance wil be an issue, but if it is, please know that there are places equally as wonderful as House and doctors equally as incredible as Dr. Friedman. I had my surgery in Illinois and my outcome is nothing to sneeze at.
Hearing retention pretty much depends on the surgical approach - translab usually means no hearing is retained, retrosigmoid gives the surgeons a chance of saving the hearing, and mid-fossa has the best retention. Sometimes a patient has a choice of approaches; sometimes not. A lot depends on the size and location of the tumor.
I had retrosigmoid and ended up SSD (single-sided deaf) but I wear a BAHA (bone-anchored hearing aid) and it works wonders. It's not like my normal hearing was, but it's helped me immensely in both business and personal settings. A BAHA is not for everyone, but there are other alternatives like the TransEar that your son can investigate. As Jim said, not everyone who is SSD finds it a problem; your son may feel the same way.
I highly recommend that you or your son contact the ANA and ask them for their informational brochures. You'll find them extremely helpful and easy to read; the information contained in them is invaluable.
Good luck - and the best to you and your son,
Jan
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Hi Darlene!
So glad you found this Forum and are helping your son & family do the research. (It can be SO overwhelming!)
I am here with my sister and BECAUSE my sister had a great ENT who recognized the possibility of her having an AN.
Now me - i am not done researching after more than a year since dx. [But this is just me.]
I believe if i need treatment, i will want the best of the best, too - so i can surely relate to what you are thinking.
In fact, i had an AN related question and sent Dr. Friedman an e-mail on Sunday evening. On Monday morning, 9:00AM EST, he was calling me on the phone to answer my question! I have to admit, i was in shock for a moment.
Just remember that doing the research sometimes is overwhelming. So take a break and then you can return to the task with a fresh outlook.
Your son is very lucky to have you as his researcher/advocate. I am so grateful for all the family support i receive, it really helps!
My thoughts and prayers to you, your son, and your extended family during this time - making the treatment decision is not easy.
We will be looking for your updates along the way. Stay strong.
Sincerely,
Sue
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Hi Darlene
At 3.8 cm, facial nerve preservation was the most important goal for me.
Erin
Erin,
On your signature you mentioned some "temp facial paralysis but I'm smiling again". How much of this resolved for you? What are you now in the House Brackmann Scale with regards to facial paralysis. Here is a link to the grading scale.
http://www.dundee.ac.uk/bells/index_files/Page767.htm
DHM
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Hi Darlene and sorry to hear about your sons diagnosis. I'm one out of a group of five forum members who just had AN removal surgery.
I had my surgery at St. Vincents which is where the House Dr.s perform most of their surgeries so here's my answers to your questions.
Dr. Friedman is a great doctor as well as all the doctors who practice out of there. The House Era Clinic removes over 300 ANs a year. I call that place an AN removal factory. I was there two weeks ago to have my AN surgery and there was eight others like myself up there at one time for a brief point. I saw a couple others come in after me. The revolving door hospital for AN removals. You couldn't be at better place for surgery to remove an AN.
For hearing preservation with a tumor that size? I don't know, that's a big one. I think one of that size would greatly decrease the chance for hearing preservation. When you consult with Dr. Friedman it shouldn't take him long to choose which type of surgical approach he finds best to accomplish in this order full tumor removal, second is facial nerve preservation and then hearing. They have seen it all, they do it all the time and I felt comfortable throughout my whole adventure. Another thing your son has on his side that is a huge advantage is his age. I'm no doctor but it seems to me that younger people come through these things so much better then even a person ten years older.
My insurance sent me outside to HEC, and I would be surprised if Kaiser didn't send him there. AN removal is a highly specialized surgery and there's not many places that can perform that surgery. I too live in California and my ENT doctor didn't even hesitate to refer me outside my insurance. He told me that's where he would go.
Wishing you the best
Mike
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Mike,
Just saw your blog... great photo of you with Dr. Swartz & Dr. "B" at House!
Because you had facial movement after surgery... I am confident that your movement will return. I did not have facial movement after surgery... it took too long to return and then synkenisis set in… and now the many expense (financial, time, energy) that go with trying to cope with that…
I think you made a good choice but will be more confirmed as your facial movement returns and you keep us updated.
Darlene,
I think facial nerve preservation is far more important than hearing nerve preservation. Those who take a risk because they hope to preserve both ... can be worse off with the wrong approach. I am going to hold off my personal testimony until I read more replies from others- on this thread.
The long term repercussions and complications caused by facial nerve damage are too high ... and let me tell you, for me, have been expensive as I try obtaining maximum symmetry to my face... Even the sinuses are affected, as the nose is now SOOH asymmetrical causing night breathing issues and improper sinus draining... There were eye issues (and costs) too as the facial nerve controls the eyelid closure function (some patients have actually lost their cornea due to this- so then the eye becomes involved too with all of this.) Facial nerve damage can lead to too MANY other medical issues… not to mention self esteem issues when your face will not express what you intend it too. I truly feel that hearing nerve damage can be corrected easier (through baha implant, transear etc for hearing loss) with today’s technology than facial nerve damage. When you have facial paralysis often people treat you as if you are either mentally incompetent or a stroke victim (to which we are NOT). Facial nerve damage is a very obvious disability that has people treat us with prejudicial assumptions about our intelligence… Hearing damage is a more invisible disability… and with today’s technology is easier to cope with. The implications for facial nerve damage are more than just physical- there is a whole psychological component too to facial palsy.
Also know that balance issues can be way worse for those who have the 8th cranial nerve “sort of†left in tact as mixed messages go the brain. When the nerve is cut- the brain steps into compensation mode with no mixed messages. Please know I ONLY know of 2 people with a 3+cm who had some hearing preservation. Erin, above, being #2. The other was Adrienne from Canada… here is a thread…
http://anausa.org/forum/index.php?topic=10792.msg124914#msg124914
Picking the wrong surgical approach to save the hearing was just NOT worth it for me. Please do not let your son repeat my mistakes… but learn from them.
This is where I was at before surgery- in 2007
http://anausa.org/forum/index.php?topic=3911.msg41719#msg41719
&
http://anausa.org/forum/index.php?topic=4053.msg43435#msg43435
This biggest mistake I made was NOT listening to Dr. Brackmann at House Ear Institute… and I was sent on a total wild goose chase in the hope to preserve my hearing… by the 1st local team of surgeons who advocated the retrosygmoid approach for a tumor as large as mine… and set me off my tracks (which were leading to HOUSE). I should have NEVER ever have listen to them…
Here is part of my story...
http://anausa.org/forum/index.php?topic=1481.msg110168#msg110168
Please know that HEI will look at your MRI CD’s for free. I know that you already have a consult there. This is good! I think you should at least run your son’s scans past Dr. Brackmann. If he thinks a Retrosygmoid is ok to do- then do it.
http://anausa.org/forum/index.php?topic=10427.0
However if he says, “don’t do itâ€, learn from my mistakes, and LISTEN to him. Even if you choose a different surgeon than Brackmann (know the entire HOUSE team is exceptional and you really cannot go too wrong there) at LEAST get his opinion. It will not cost you to do so.
Here is their link
http://www.houseearclinic.com/acousticneuromaFAQ.htm
Quote
“This mail/telephone consultation is free of charge. (This offer does not apply to office consultations.)â€
Sounds to me that your son has a wonderful caring Mom who is willing to advocate on his behalf. HUGS :)
As far as Kaiser Insurance at House… I suggest you make a post here
http://anausa.org/forum/index.php?board=14.0
“Has anyone had surgery at House on Kaiser Insurance?†might be a suggested topic title…
Know that the insurance whiz at House is “Ritaâ€â€¦ talk to her as she will have a good idea.
Daisy Head Mazy
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Darlene,
Here is a link of facial palsy people’s photos who had to undergo facial reanimation surgery due to damage to their facial nerve.
http://www.hopkinsfacialplastics.com/gallery_facial_reanimation.php
As you can see the full toothy smile cannot be replaced with plastic surgery- only a “Mona Lisa smileâ€. I cannot explain how weird it is when we move our face to laugh... and how painful it is when onlookers look away with a mortified look on their face. We become so self conscious and often refrain from laughter.
The key is you need to find a competent and experienced surgeon who will preserve the facial nerve... and not damage it -as the tumor is surgically removed.
Would your son prefer to have a hearing implant behind his ear ... or a face that will NOT express what he wants?
Because he is young he would also be a candidate for the multi-step surgery approach.
This is where they de-bulk the tumor and leave residual tumor on the facial nerve. They watch for re-growth in follow-up MRI’s … and if there is re-growth then they treat it with either Gamma or Cyber Knife (and radiation comes with a hole can of worms too, it causes swelling, and does not always work for everyone as it did for Jim Scott). I agreed to this approach, after reading Jim Scott's testimony, but once in there the surgeon just kept dissecting the tumor …and then nicked the facial nerve as it was incased with the tumor and not visible with the retrosygmoid approach.
In hindsight that I came out “deaf left†anyway- I should have taken the translab approach as my facial nerve MAY have been left in tact. “Shoulda woulda coulda†will not help me now – but maybe my story will help the next patient to make a more informed choice…
I never saw these facial palsy photos until after my surgery… “if†I had seen them before I would have decided differently.
These are not typically fast growing tumors. Take the time to research, with your son, weight out the options … and take time to reflect.
DHM
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DMH
I just noticed your quesion above: I was a "2" on the HB scale and was a "1" which is considered no paralysis at 3 months.
Erin
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I am also a House graduate--I had surgery in November 2008 on a 4.5+ cm tumor at age 34. Dr Brackmann did my surgery, and I can't remember the names of the rest of the team, but they were all awesome. I had translab, which means I am now deaf in that ear. I also had an unexpected facial nerve tumor rather than an actual AN, so they had to cut and graft my facial nerve. Being deaf in one ear is a cake walk compared to facial paralysis!!!!!!!!!!!!!! Luckily, my graft took very well, and I am now between a Grade II and Grade III on the House/Brackmann scale after only a year.
I got a BAHA implant at the time of my AN surgery, but haven't gotten to get my transmitter thingy yet. Hopefully soon.
We had to fight my insurance company (an HMO) to go to House. It involved House and my referring dr making a request and me writing a letter. And then writing another letter to appeal after they denied me. I got a lawyer involved and a family friend pulled some strings with the board making decisions at the insurance company, so it was resolved fairly quickly, which was a good thing because I was on the verge of having some major complications from the size of the tumor and Dr Brackmann wanted to get it out ASAP. Rita at House was super helpful on guiding me through all that.
Good luck to your son!!!!!!!!!
Vonda
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Hi Darlene!
Good to see you made it! ;D
Just wanted to chime in here and mention that choosing to sacrifice the hearing (translab) does not always mean your facial nerve will be left fully functioning. Yes, there's a better view of the facial nerve using this approach, but sometimes the tumor is just in the wrong place to allow total preservation of the nerve. Just didn't want anyone to get the impression that loss of hearing automatically means a working facial nerve. It's not so much a choice, but just how it happens to work out in your individual case. Even a talented and experienced surgeon cannot guarantee you will not have any facial nerve damage. The key is to find a surgeon you are comfortable with and decide for yourself if the benefits outweigh the risks.
Hope your son is doing well and I hope you were able to enjoy a peaceful Thanksgiving!
Lori
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Some excellent points by Lori.
I don't think any one of us consciously chooses SSD over facial nerve damage, and it's important to keep in mind that there are no guarantees. A lot depends on the size and location of the tumor, and despite MRIs, doctors don't really know what they are dealing with until they open up the skull.
I chose retrosigmoid in the hopes that I would be able to keep my hearing, but my AN was wrapped around my hearing nerve. This was discovered during my surgery - so much for my hopes ::) When it came to a choice of removing the entire tumor or sacrificing my hearing nerve my docs had a choice to make; which I wholeheartedly agree with. Point is, I thought I'd come out of surgery with some hearing in my left ear; I ended up with none.
On the flip side, the retrosigmoid approach is known for leaving patients with facial nerve damage. However, I only had slight damage that a dose of steroids swiftly rectified. Bottomline, you do your research, you decide what you think is best for you with the information you have, and you go from there. Even the best surgeon in the world cannot guarantee you anything 100% - no matter where he/she practices.
There are numerous forumites who live with facial nerve damage every day and I think the majority of them will tell you that they live full, productive lives. Is life always easy for them? No. Would they have chosen facial nerve damage? Absolutely not. But life is what you make of it and each and every day lots of people on this forum choose to step up to the plate and get on with their lives.
Whatever your son's outcome, I'm confident he will be able to lead a life worth living.
Jan